Sections

Chronic Honeymoon Cystitis

Document Actions

About two years ago, I realized that my recurring cystitis really is chronic. It's probably not going to go away.

Annalee Newitz

Issue #39, September 1998

It has finally hit me that my body is really mine forever. Nothing about it is going to change, except that it will get gradually more worn out and infirm as I grow older. Every little bit of damage — my two capped teeth, the scar on my right leg, the stretch marks on my thighs and chest, the occasional weird bump on my skin — is going to be with me for the rest of my life.

I know this now because at the age of twenty-nine my life has become finite. There are no more vast, unknown spaces lurking in my future that I can't possibly understand. Sure, there will be surprises — almost certainly ones that I can't imagine now. But as I approach middle age, even those surprises are things I know about. I plan for them. I go to therapy to figure out the best way to deal with ugly possibilities and horrifying losses. I don't fear death inordinately, but I know it's coming. Everyday, the flimsiness and breakability of my body reminds me that I am not an angel, not a vampire — just a human whose destiny is sometimes alarmingly biological.

Nothing makes all this more obvious than the disease I've lived with ever since I was seventeen. Back then, a doctor referred to it in medical slang as "honeymoon cystitis."

My first case of cystitis struck when life was anything but finite. I had just turned seventeen and the future loomed in front of me like a shocking, alternate dimension. There was no telling what would happen. Small things frightened me because I had never personally faced them before: what, for instance, would I do if my car broke down? The thought of it made me sweat when I drove to school. What if I had to go shopping alone? Or make a doctor's appointment? These were things I had seen done, but adults afforded me so little respect (indeed, so little attention), that I imagined they would simply ignore me if I were to attempt to engage in a transaction that involved money or making official appointments.

Another thing I didn't know how to do — and which was a far more pressing issue in my teenaged estimation — was lose my virginity. But after my seventeenth birthday, I managed to master this one adult task without anxiety: I convinced someone to have sex with me. Shortly thereafter, my friend and I spent a night experimenting with different types of condoms.

Five in one night seemed nearly adequate to us, and I began to understand why intercourse could in some instances be almost as compelling as what one might do with one's hands and mouth. The future had become slightly less bewildering in one respect at least. I had now done "it."

And that was when my body rebelled. Just hours after the condom experiments, a hideous and awful transformation occurred. Unbeknownst to me, the friction from having sex had encouraged E. coli bacteria (common to the large intestine) to enter my urethra, stick to the cellular lining in my bladder, and begin replicating. My urinary tract was in the first stages of a massive infection.

But I was in my body without any of that knowledge — my terrible, infinite body, whose feelings and possible failures I only barely understood. All I knew was that my bladder was burning up, painfully skewering the very part of me I had just opened up for the purposes of pleasure. I kept feeling like I needed to piss, and yet nothing came out. I spent the rest of the night on the toilet, my muscles knotted up, too horrified to cry when I began passing blood and spongy pieces of sloughed skin. Somewhere, I dimly remembered having bladder infections as a child, but they were nothing like this — nothing like being alone at four in the morning, parents asleep down the hall, experiencing a disease that seemed unsettlingly metaphorical in its implications.

Later that morning, I was pale and exhausted. My parents took me to the HMO assigned by my mother's health insurance plan. After a urine test, the doctor asked, "Are you sexually active?" Yes I was. "This is what we call honeymoon cystitis," he continued. "It's a bladder infection or UTI, short for urinary tract infection. We're not sure why this happens to some women and not others, but UTIs can be caused by a lot of sexual contact, or sexual contact after a long period of abstinence. We're going to give you some antibiotics and pain killers and you should be fine within about seven days." They gave me some kind of penicillin derivative — I can't remember what — and a drug called pyridium that has in years since come to be one of my closest friends. Although it turns your urine a woefully neon shade of orange, it kills all the pain of a UTI and at that moment had the happy effect of making me feel somewhat normal again.

But I wasn't normal. The infection wouldn't go away. In fact, it go worse. Week after week, I was at the HMO, getting weirder and weirder lab results. Because this HMO assigned its patients to random doctors, I kept seeing new people who would glance over my chart and make faces. One, a kind-looking young man, ultimately said, "I've never seen this kind of infection before except in older men with prostate problems. You should probably consult a specialist." It had been nearly eight months, and in that time I'd learned how to make doctor's appointments on my own, memorized the shortest route to the HMO in my car, and had familiarized myself with the names and side-effects of half-a-dozen antibiotics. I knew more about my mother's health insurance coverage than she did.

And I had learned something about myself that I cannot ever completely unlearn: sex, no matter how pleasurable, causes disease. Even more repulsively, I had found out that the act of intercourse rubs bacteria from the intestines all over the vagina and up into the urethra. In plain American English, that meant there were far too many messy connections between fucking, shitting, and pissing than I ever wanted to face.

I was finally diagnosed with chronic cystitis by a creepy white urologist from South Africa who remarked casually to my mother and I that my condition was "most common among the darker races." His phrase floated in my mind, perplexing and strange. This was the scientific opinion of a man I was supposed to trust with my body, a man who was about to look between my spread legs and thread a long instrument up my urethra to take pictures of my bladder. In that moment, I was so numb that I reduced his words to a series of nonsense syllables. Those sounds, I knew, were enormous in their implications: I couldn't absorb them.

Like a traumatic memory, my time in his examination room is stark and fragmented. I was naked. A nurse put some kind of topical anaesthetic on the cotton tip of a long swab and plugged up my urethra with it, to dull the sensations I might feel when the doctor used his camera on me. I had to wait ten minutes alone in that room while the anaesthetic took effect.

Staring at the wooden cabinets on the wall (they were walnut; I remember), I held perfectly still so that the slim stick poking up between my legs would remain in its painful place. "This is not my body. I am not here," I said to myself. I felt powerful as the words became a kind of chant, a way to overcome my discomfort and humiliation.

This is not my body. I am not here. This is not my body. I am not here.
The camera hurt every step of the way. I could feel the doctor twirling it into me, needling me, moving it around. A technician had pumped water inside my bladder to make the visuals better, and when the camera came out it was like I had been uncorked. Water gushed out of me, uncontrollably, and into some kind of receptacle they had set up. Nobody addressed me directly during the procedure. Nobody had told me I was going to suddenly piss all over myself like that. When it was over, a nurse noted, "You might see a little blood next time you pee." I was glad for the information.

The doctor prescribed a sulfa drug for a period of several months, noting that I should drink lots of water to reduce the side-effects of sulfa, which collects in the kidneys and becomes toxic. After the first course of treatement was over, he recommended that I take a low dose of sulfa each time I had intercourse. His diagnosis, and cure, have circumscribed my experience of intercourse ever since. For several years, I came to view the sex act as something that inevitably culminated with antibiotics.

But my body was infinite back then. The treatment always seemed distant, a talisman, something happening to a body that wasn't really mine. I think I always imagined that my cystitis would just evaporate one day, perhaps at the moment when I was finally in a "mature" relationship. I didn't worry about the effects sulfa drugs would have on my kidneys, or what other effects long-term antibiotic treatment might have.

Although many doctors had told me to drink lots of water (8 glasses a day is recommended for people with my condition), very little coffee, and as much cranberry juice as I could stand (it makes the urine acidic and unpleasant for bacteria), I did the opposite. I grew to despise the taste of water. Drinking a lot of it made me feel bloated and strange. I would go for a whole day drinking nothing but coffee. My bladder would burn and I would wake up at night terrified, wondering if I had another infection, hoping fervently that I wouldn't need antibiotics when the student health service was closed.

How do you explain a disease that haunts your sex life, reminding you over and over that the boundary between fucking and defecation is an illusion? I became obsessively convinced that my flesh was an allegory. My body's sickness was a story about sexual contamination, a decoded cypher that revealed men were hurting me and I was hurting myself by wanting them sexually. I yearned to rewrite myself coherently, to make my life into some kind of moral (or immoral) justification for the presence or absence of infection.

I became a nymphomaniac, then celibate for a few years; at one point, I tried to convert my bisexuality into lesbianism. I imagined that new socio-sexual narratives would lead me out of my physical distress.

At last, I gave up trying to cure myself through literary analysis.

About two years ago, I realized that my recurring cystitis really is chronic. It's probably not going to go away. To accept this and stay healthy, I've had to demystify what amounts to nothing more than a design flaw in my body. I'm forcing myself, with difficulty, to believe that cystitis really is just a biological event, not a punishment. Despite its unfortunate associations, my disease does not prove that sex is dirty or that my bedmates are infecting me with their sick desires. It does not prove that I am somehow erotically abnormal. Thousands of women live with my very same condition and their lives have not turned into a David Cronenberg movie.

I've investigated ways to reduce my intake of antibiotics. These days, I take them as infrequently as possible, relying instead on preventative measures like drinking lots of water, taking vitamins, and (to put it in medicalese) urinating after intercourse. I've learned about being a proactive patient, and I tell my doctors to fill out large prescriptions of low-dosage macrodantin — less toxic than a sulfa drug — for me to use when I need it. Even with prevention, I get about three or four infections a year, but usually I can feel them coming on and take the antibiotics in time to knock them out quickly.

And yet I can't entirely forget the moral conservatism that my disease mimics. My health insurance is at a "special" (i.e., more punishingly expensive) rate due to my chronic infections. Every time I drag myself to the bathroom after sex, I have to squelch my urge to think: dirty dirty dirty.

Instead, I have a new chant. It sounds cheesy, but it works.

This is my body. I am here.

Annalee Newitz is a freelance writer and lecturer. She has published in Feed, The Chronicle of Higher Education, The San Francisco Bay Guardian, and the New York Press. Reach her at tabloid@jps.net.